A little explanation please

[RB74]

Hi there

I've been a lurker for a while after having radioactive iodine treatment for an overactive thyroid and because I don't fully understand all that is going on lol.

I had my treatment in October and after loads of follow ups, have now been started on Levothyroxine 50mcg.

My last blood tests showed T4 was -10 and TSH was 3.28

I had blood tests yesterday so don't have those results yet but have a consultation next week.

My question is.....what does all this mean please? Should I be asking anything specific? I just don't feel right but don't know how I should feel if that makes sense?

Any help greatly appreciated 🙏

[SlowDragon Administrator]

Welcome to the forum

How many weeks have you been on 50mcg levothyroxine

Which brand of levothyroxine is it

Was test done early morning and last dose levothyroxine 24 hours before test

Please add ranges (figures in brackets) after each result

Different labs have different ranges

Eg

Ft4 10 (12-22) or Ft4 10 (7-17)

TSH over 2 shows you are ready for next dose increase in levothyroxine up to 75mcg and bloods should be retested again in another 6-8 weeks

May need further increase in levothyroxine after that

Meanwhile

Essential to get vitamin D, folate, ferritin and B12 levels tested too

What vitamin supplements are you currently taking, if any

[RB74 in reply to SlowDragon]

Thank you so much for taking the time to reply.

These results were before I started Levothyroxine and I assume are what prompted the medication?

I have now been on the Accord brand for 4 weeks....have just finished the first pack so I think I would be best checking back when I get the results from yesterday's bloods as I would have done a month at that point?

I didn't see any ranges on the letter I received but will ask at my appointment next week....that's really helpful to know what I should be asking for as I'm clueless and confusing myself.

I'm not taking any other supplements but I'd be interested to hear recommendations if you have some suggestions?

Thank you again

[SlowDragon Administrator in reply to RB74]

Recommended to test 6-8 weeks after any dose change in levothyroxine

Was test done early morning and last dose levothyroxine 24 hours before test

You need to test vitamin levels

Don’t start supplements

Test first

[RB74 in reply to SlowDragon]

Thank you so much again

Test was lunch time so 7 hours after dose of Levothyroxine.

Will ask the consultant then about testing vitamin levels before addressing that area.

Would I be OK to do a new post after next week and my appointment for further advice as you've been so helpful and I really appreciate your help?

[SlowDragon Administrator in reply to RB74]

So TSH will be lower testing at lunchtime and Ft4 will be falsely high as last dose levothyroxine was before test

ALWAYS

A) test thyroid levels early morning, 9am latest

B) last dose levothyroxine 24 hours before test

C) test after minimum 6-8 weeks after any dose or brand change

D) always get actual results and ranges

E) keep good record of how you feel on each dose/brand levothyroxine

F) test and maintain optimal vitamin levels

[RB74]

You are a star...thank you for all the advice which I will definitely take heed of.

Is the brand of medication I'm on a good one then or do I have the option to ask for an alternative? Just as a reminder, the one I have is Accord

[helvella Administrator in reply to RB74]

The problem is that no-one can tell you!

Some of us feel better on one make rather than another.

Although the information isn't much help at this stage, there is lots in helvella's medicines documents (UK and Rest of the World) which can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.

helvella.blogspot.com/p/hel...

[Regenallotment Ambassador in reply to RB74]

it often depends on the fillers/excipients (in Helvella’s amazing documentation). E.g Accord contains lactose and gave me bubbling tummy, pain, indigestion, reflux within minutes of taking it, Teva (no lactose) was fine for me but for many others causes all manner of side effects (contains mannitol which seems to affect some and not others). It’s very personal but worth being mindful of. Once you find a brand that works you can actually request it always from GP and pharmacy, there are NHS guidelines for hypothyroidism that say if the patient has trouble then stick to one brand. 🌱

[RB74 in reply to Regenallotment]

That's amazing information...thank you so much.I actually have the stomach symptoms but didn't realise that might be what it is so definitely one for discussion.

Thank you again

[Regenallotment Ambassador in reply to RB74]

oh wow, made my day, so glad it was helpful. I spent 3 years on HRT having dreadful indigestion and reflux, wasn’t till I learned about lactose here that I realised that wasn’t normal 🙈 and the HRT had lactose. Not on it now, only 24 hours on Accord proved the lactose thing for me!

I have a friend who told a doctor she doesn’t need laxatives for constipation she just had a bowl of icecream 🤣 doctor was 😳😳😳 are you sure you wouldn’t prefer senakot 🤣

Is your tummy reacting to lactose or mannitol? Amazing how often it comes up here.

If it’s lactose there are two brands to try Teva (the one with mannitol lots of people don’t like, I was fine on it) and Aristo recently changed name to Vencamil the issue with the latter is it only comes in 100mcg tablets but a £3 pill splitter from Amazon allows you to halve and quarter really easily. GP or pharmacist might be ?? about splitting but reassure them you are quite capable 👏 Teva on the other hand comes in 25,50,75 and 100mcg so is often preferred for east of calculating number of tablets. 🌱

[RB74 in reply to Regenallotment]

Wow....your knowledge is stunning in a minefield that thyroid problems are and taking the time to give me such a clear but detailed reply is so kind.I'm making so many notes ready for the consultant on Monday....he's going to wonder who I am with all my questions lol

I normally go absolutely clueless and agree with everything I'm told so he will be shocked....can't wait.

Seriously, from the bottom of my heart, thank you

[FancyPants54 in reply to RB74]

If you tell the consultant that your bloods must be done before 9am and that last dose of Levo needs to be 24hrs before, he will poo-poo it. This is patient wisdom from many years of trial and error. So just keep that information to yourself.

Take written list of symptoms with you and either give them to him or talk about them. Everything that seems off should be written down so that you don't forget anything.

Keep a folder of all your printed test results and notes. It's invaluable.

[RB74 in reply to FancyPants54]

Thank you so much.All seems so sensible but I'm just not thinking enough.

Your comments are so helpful and I will absolutely follow your advice.

[helvella Administrator in reply to Regenallotment]

The Aristo didn't actually changes its name to Vencamil.

They supply the exact same tablets under BOTH "Levothyroxine" (generic) and "Vencamil" (brand). It is easier for a doctor to write the brand if they intend you to get the Aristo product than add a note hoping the pharmacist agrees.

[Regenallotment Ambassador in reply to helvella]

you have lost me completely… totally, I’ve looked it up, read about it, have the old packaging…. I don’t get it 😳

Is Aristo the pharmaceutical company name?

Another example would be Bayer

Isn’t Levothyroxine the drug name?

Another example would be Asprin

Is Vencamil a brand of the drug belonging to the pharmaceutical company?

In the Bayer example???

So is is it Aristo Levothyroxine or Vencamil Levothyroxine or Vencamil Aristo or Aristo Vencamil?

Yep - I’m lost, sorry I really did try, but don’t know what you mean by the name didn’t change, Vencamil is new for me 🤷🏽‍♀️

[helvella Administrator in reply to Regenallotment]

Aristo is the company name. They are the actual manufacturer.

They put exactly the same tablets into two different packages.

The Patient Information Leaflets are the same:

products.mhra.gov.uk/search...

But one box says "Levothyroxine Aristo 100 micrograms tablets levothyroxine sodium"; the other says "Vencamil 100 micrograms tablets Levothyroxine sodium"

Both have the Aristo name logo at bottom right of the pack.

The pharmacist could order either product. The PIP numbers (codes that pharmacists use for ordering) are different. The prices are identical (according to the documentation I can access).

But to prescribe one, the GP can simply write "Vencamil 100 micrograms 28 tablets". To prescribe the other, they have to write "Levothyroxine sodium 100 micrograms 28 tablets (Aristo Pharma)". And that probably also means they have to literally type the company name in. If they do something wrong, like put "Aristo Pharma" on the second line, it will most likely get ignored.

BOTH are available - the Vencamil packaged version was added to available products and it didn't replace the existing product.

Photo of Aristo Vencamil packaging.

[helvella Administrator in reply to helvella]

The "generic" packaging.

Levothyroxine Aristo 100 micrograms package

[Regenallotment Ambassador in reply to helvella]

ah ok thanks for explaining, I get it, it didn’t replace, it is in addition to 💡